I was admitted into the hospital in June of 2017 with mononucleosis. I was in so much pain I couldn’t manage without heavy pain killers so they had me on morphine through an IV for one week. All of the doctors told me it was the worst case of mono they had ever seen. After they sent me home I was feeling a lot better, I wasn’t in anymore pain, I just felt very tired but they told me that was expected after mono.
About 6 days after being home, I got a headache. I knew right away something was wrong because it wasn’t like any normal headache, it was intense pressure all over my head. After 3 days of Tylenol, lots of fluids, and lots of sleep, the headache had not subsided so I went to the doctor. She told me it was most likely a migraine and prescribed me with medication. I tried this for another couple days but got no relief and it seemed like things were getting worse so my dad decided to take me to the ER.
The nurse who took my vitals and heard my symptoms seemed extremely concerned and had me brought to a bed right away. They did a lot of tests on me including a spinal tap, blood tests, blood cultures, CT scans, but couldn’t find anything wrong. I spent the next few days in excruciating pain in the ER. They had me on pain killers through an IV that only gave me relief for an hour at a time. I was hallucinating like crazy, my head felt like it was going to explode, and I going downhill very rapidly. They were sure it was meningitis but for whatever reason my spinal taps were coming back clear. My doctor decided she wanted another blood culture done, and this came back showing I was septic.
I was rushed to the ICU and I remember my mom telling me she would meet me up there, at this point I could talk fine. When my mom came into my room in the ICU I could no longer speak. It sounded like my tongue was really swollen except it wasn’t swollen at all, the doctors described it as “hot potato mouth” because it sounded like I was talking while trying to eat a hot potato. They had no idea what had happened in the elevator up to the ICU, but I could no longer eat, drink, or speak.
I can’t remember how many days I was in the ICU, I was barely conscious the whole time, but the doctors were not making any progress and I was still getting worse so they made the decision to fly me to the Vancouver Children’s Hospital. I was brought to the ICU at children’s and had some more tests done. My MRI showed that the nerves that control my tongue were paralyzed, so I was diagnosed with hypoglossal nerve palsy and had an NG tube inserted. My CT scan showed that my lungs were filled with water, and there was water around my heart. And my spinal tap showed signs of meningitis.
I was in such bad condition that one night my mom was told to prepare for the worst. Then miraculously I got better very quickly, it was seriously like a miracle you would see in a movie. The nurses and doctors at Vancouver Children’s were absolutely amazing and I believe if my doctor hadn’t made the call to fly me to them, I wouldn’t be here today.
I left the hospital after 2 weeks of being in Vancouver with my NG tube still in, because my tongue had not made any improvements. I had the NG tube for 4 months in total and then recovered just enough that I could eat on my own. I’m now 20 years old and my tongue is still partially paralyzed so I have some troubles talking and eating, but I am so thankful to still be here. With that being said this experience was very traumatic. I now suffer from depression, anxiety, and PTSD. I am also still mourning the loss of the life I used to live, where I felt completely normal.